Fibromyalgia
An Information Booklet
About this booklet
This booklet is written for people with fibromyalgia and their families and friends. It explains how fibromyalgia affects people in different ways, and how doctors diagnose it. It then explains what can be done to help with the symptoms, and offers advice on living with it more easily. Near the end of the booklet you will find information on how to contact the Arthritis Research Campaign (arc) and other organizations which can provide information, and a few suggestions for further reading. Terms that appear in italics when they are first used are explained in the glossary at the back of the booklet.
What is fibromyalgia?
Fibromyalgia is a name for widespread pain affecting the muscles but not the joints. It is a chronic condition, but it is not life-threatening or progressive and does not cause permanent damage to muscles, bones or joints. There are usually no outward signs of the condition and people with fibromyalgia often look well but feel awful. Because of this, other people may not appreciate the pain and tiredness you are suffering and this can cause additional distress. However, it is important to stress that the pain suffered by people with fibromyalgia is real and may be severe, even though it is usually not associated with visible swelling or deformities of muscles or joints.
Fibromyalgia is a common condition. A study from America found that up to 2% of people suffer from fibromyalgia, and it occurs more commonly in women than in men. The amount of pain varies from person to person and from day to day. The pain may be quite mild on many days but it is sometimes so severe that it affects your work and your personal and social life. Some people find that the pain feels worse in cold or damp weather. In fibromyalgia the tendons and ligaments, or fibrous tissues (fibro-), and the muscles (-my-) are affected by pain (-algia) and tenderness. It may feel as though the pain affects the whole body.
There are usually tender points in certain areas of the body. These tender points help the doctor to make the diagnosis. If enough pressure is applied to these points most people will find it uncomfortable, but in fibromyalgia many of these points can be extremely tender even when they are pressed quite gently. Tenderness at individual sites sometimes occurs and this can give rise to localized conditions such as tennis elbow. In fibromyalgia, however, there is tenderness at a number of points. The figure below shows the positions of the points that doctors sometimes press to check whether a person has fibromyalgia.
In the past fibromyalgia was often diagnosed as muscular rheumatism or fibrositis, or it was misdiagnosed as degenerative disease of the joints (signs of wear and tear are very common on spine x-rays as we get older, whether there is pain or not). Research in the past few years has led to a clearer picture of what we mean by fibromyalgia, and the diagnosis is being made more often by rheumatologists and general practitioners (GPs).
Figure 1. Sites of tender points in fibromyalgia
What are the symptoms of fibromyalgia?
Pain, tiredness and sleep disturbance are the main symptoms of fibromyalgia. Most people feel the pain of fibromyalgia as aching, stiffness and tiredness in the muscles around the joints. It may feel worse first thing in the morning, or as the day goes on, or with activity. It may be particularly bad in one part of the body or may be equally bad in several different areas such as the limbs, neck and back. Patients with fibromyalgia often feel that they have pain all over their bodies.
Sometimes tiredness (fatigue) can be the most severe aspect of fibromyalgia. There may be overall tiredness and lack of energy, or muscular fatigue and loss of stamina. Either way, it can be difficult to climb the stairs, do the household chores, go shopping or go to work. Becoming less fit physically makes matters worse. Waking in the morning feeling unrefreshed is common.
Less frequent but still troublesome symptoms include:
- poor circulation – tingling, numbness or swelling of the hands and feet
- headache
- irritability or feeling low or weepy
- forgetfulness or poor concentration
- feeling an urgent need to pass water
- irritable bowels (diarrhoea or constipation and abdominal pain).
Of course symptoms like these can have other causes, and your doctor can help decide whether any further tests or advice are needed. There are no blood tests, x-rays or scans that can diagnose fibromyalgia. When tests are carried out they are usually done to make sure that there is no other cause for the symptoms. In fibromyalgia, blood tests and x-rays are usually normal. The severity of the symptoms and the effects of fibromyalgia can vary considerably, and this range of severity can cause problems in diagnosing the condition and lead to varying medical opinions. Patients often find it helpful that their pattern of symptoms is taken seriously and recognized as being due to fibromyalgia – even though this may not always lead to any change in treatment.
Is fibromyalgia similar to chronic or postviral fatigue (ME)?
The symptoms described in myalgic encephalomyelitis (ME) are often very similar to those in fibromyalgia except that ME sufferers can often recall a viral infection before symptoms appeared, and may have less pain. Many doctors use the term 'chronic fatigue syndrome' rather than ME. More needs to be known about these conditions before we are able to say whether they are the same thing.
What causes fibromyalgia?
We do not know exactly what causes fibromyalgia but there is now a clearer understanding that there is an interaction between the physical and mental aspects of this illness. Fibromyalgia is an illness involving both the mind and the body. The amount of pain felt by a person with fibromyalgia is often affected by the way they are feeling, and the reverse is also true. Feeling depressed, stressed or anxious may make the muscular pain feel worse, which may in turn add to the stress and anxiety.
Research into fibromyalgia has been stimulated by the finding of specific tender points and the discovery of sleep disturbance. Brain wave studies (electroencephalography, or EEG) during sleep have revealed that people with fibromyalgia often lose deep sleep. In an experiment, some healthy people who were woken up in each period of deep sleep suffered the typical symptoms and tender points of fibromyalgia.
Several things could cause the disturbance of deep sleep that is often found in patients with fibromyalgia. More than one cause may be affecting any particular individual. Pain or stiffness in the neck may disturb sleep. There may be the pain and stress of an injury or of another disease like arthritis. Emotional pain and the strain of anxiety or depression brought on by events or relationships at home or at work may also be important factors.
In some people with fibromyalgia there is a vicious circle of pain and sleep disturbance (see Figure 2). This can be enough to cause depression even if this was not initially a problem.
Figure 2. The cycle of pain and sleep disturbance
Research has been carried out showing that patients with fibromyalgia suffer increased sensitivity (known as sensitization) to pressure or relatively minor knocks which would not normally be painful. To some extent this may be related to chemical changes in the nervous system, but this is not fully understood.
How can fibromyalgia be treated?
There is no cure for fibromyalgia but with the help of your doctor and family it may be possible to find ways of managing your symptoms so that you can continue with your normal activities. Your doctor may be able to help you by making the diagnosis of fibromyalgia and reassuring you that despite all the pain you don't have a condition that will cause permanent disability. You are no more likely to develop arthritis later on than anyone else. Your family can also help with understanding and encouragement.
Your doctor can prescribe a variety of medications which may help with the pain. These include painkillers such as paracetamol and non-steroidal anti-inflammatory drugs (NSAIDs) (see arc leaflet 'Non-Steroidal Anti-Inflammatory Drugs'). However, some patients with fibromyalgia prefer not to take these drugs long-term due to side-effects such as heartburn and stomach pain. A steroid injection in the affected area may give temporary relief if one or two places are particularly painful. However, these injections should not be repeated too frequently because this could lead to flesh or muscle damage at the area injected. The injections do not lead to long-term improvement in the pain.
Your doctor can also try to help to tackle the sleep disturbance. Sleeping in a soft collar can help some people sleep better, particularly if the neck is uncomfortable. There is no harm in you trying this for a week or so, providing you do not get into the habit of wearing it during the day. Sleeping tablets can be helpful in the short term to improve sleep pattern, but long-term use is best avoided because these tablets are often habit-forming and eventually lose their effect.
Many people with fibromyalgia can also be helped by amitriptyline and similar drugs such as dothiepin. These drugs are sometimes used to treat depression but they can also be used to reduce muscle pain and restore sleep pattern in fibromyalgia. This can be helpful even if you do not have depression (which is often associated with fibromyalgia). The benefit may not be immediate, and you may notice side-effects – usually drowsiness during the day, or a dry mouth – before the benefits, so it is worth trying for at least a couple of months before deciding if they are helpful. Your doctor will gradually raise the dose to an effective level. If depression is a major problem for you, your doctor may suggest other antidepressants such as fluoxetine or paroxetine.
In recent years, drug companies have carried out trials using a number of new drugs to treat people with fibromyalgia. These include pregabalin, gabapentin and duloxetine. These drugs are generally believed to work by altering levels of chemicals within the brain and nervous system and not by acting on muscles. Trials have shown that they may help reduce pain in people with fibromyalgia, but it is not clear how long this relief will last. It is too early to tell whether these drugs will become widely used in the treatment of fibromyalgia, but it is important to be aware that research into new ways to help people with this condition is going on all the time. arc is currently funding a large research trial looking at different ways of helping people with fibromyalgia and other types of muscular pain.
Your doctor may also refer you to a physiotherapist, an occupational therapist or a counsellor for further information and advice about fibromyalgia. Physiotherapists can help you to improve your posture, stretch and relax your muscles, and become more active. They can also give advice and support about gradually increasing activity and exercise and about relaxation techniques. Some physiotherapists and other health care professionals use acupuncture to treat people with fibromyalgia and this has been shown to help some people. The effect often wears off when the course of acupuncture stops.
How can I treat my own fibromyalgia?
Fibromyalgia varies from one person to another and the symptoms may not be the same from day to day. The pain and tiredness can sometimes be mild. Sometimes, however, those symptoms can be severe and troublesome. Symptoms may last for years and some people find that they never resolve completely. The good news is that many people have learnt to manage their condition so that they can continue to live their lives enjoyably despite these symptoms. People with fibromyalgia tell us that the following advice can be helpful.
- Learn more about fibromyalgia (from this booklet and from other sources) and find out if there is a local support group in your area. Sharing the frustration of having this condition and knowing that other people out there have similar problems can help some people enormously.
- Ask your family, friends and/or colleagues to read this booklet and, if you want to, encourage them to discuss your condition with you. Your illness will be affecting their lives as well and they will need to know how and when to help you. It is especially important to understand that a patient with fibromyalgia may be in severe pain even if he or she looks completely normal to others.
- Try the medication your doctor has to offer and then discuss with him/her if you want to continue taking it.
- Don't drink alcohol, tea or coffee late at night, as these may disturb your sleep. Relaxation and gentle exercise can help you sleep.
- Learn to take time out for yourself. Reduce muscle tension. Learn to relax your mind and your muscles. Playing music or an audiotape about relaxation techniques can also help.
- Find more effective ways of communicating feelings such as anger. Counselling or cognitive behavioural therapy may help and your GP may be able to refer you.
- Try to sort out any unhappiness or difficulties at home or at work.
- Eat healthily and keep your weight down.
What about exercise?
Because the muscles of people with fibromyalgia feel so tense, they are more vulnerable to sprains and strains, so it is especially important to try to relieve the muscle tension by stretching. It is best to take advice from a physiotherapist about which stretching exercises will be best for you. These exercises can be done anywhere at any time.
Research has shown that aerobic exercise improves fitness and reduces pain and fatigue in people with fibromyalgia. This needn't mean joining an 'aerobics' class (unless you want to). Aerobic exercise means increasing the circulation of oxygen through the blood, so any exercise that gets you breathing heavily and your heart beating faster can be aerobic.
Swimming is one of the best forms of exercise for fibromyalgia. Many people who have not learned to swim find the effort to do so is well worthwhile.
Try different activities to find out what helps you and gradually try to do more each day, pacing yourself and gradually increasing your physical activity. You must be prepared for setbacks, and for the fact that activity may cause pain initially. You may find it helpful to seek advice from a physiotherapist, or to cut back the exercise until you find the level that does not cause you lasting pain and increase again slowly. Remember too that what helps one person with fibromyalgia may not work so well for another.
Don't be overambitious about your progress. Slow and steady is better. If you feel that walking down the road is more than you can manage, start by counting the houses you pass each day and after some time you will find you're counting the streets. If you go swimming (and warmer water is more soothing), start just by standing and moving your arms and legs against the resistance of the water, then go on to lengths, and eventually you could be doing the sort of exercise you used to do.
When you start doing exercises you may find that the amount of pain and tiredness increases initially. Build up your exercise at a rate you can cope with and do not do exercises that cause you a lot of pain. Start gently and build up to at least 3 hours of exercise each week. It is often better to do 10 minutes and have a break than to do an hour all in one go. If pain and tiredness increase, then don't do quite so much the next day.
Exercising progressively will improve your fitness, flexibility and stamina. Gradually your muscles will become stronger and there will be more muscle fibres to move your limbs smoothly and avoid jarring of tendons and ligaments. Exercise also promotes sleep and improves your sense of well-being.
Other forms of treatment
No particular diet has been shown to help fibromyalgia, but it is sensible to lose excess weight and to avoid drinking too much coffee and tea.
Treatments like massage, acupuncture, physiotherapy, and manipulation by a chiropractor or osteopath can all soothe pain and improve morale, but the benefits may not be long-lasting. Some of these treatments are available from the NHS but others are not.
Exercise, sound sleep and dealing with physical or mental stress are the keys to reducing the pain and fatigue of fibromyalgia. Going to work can help some people, but others find it impossible to return to work. Until research provides us with better answers you should aim for self-reliance.
Glossary
Cognitive behavioural therapy – a psychological treatment based on the assumption that most of a person's thought patterns and his/her emotional and behavioural reactions are learned and can therefore be changed. The therapy usually focuses on the person's present difficulties rather than the past. The aim is to help the individual to learn more positive thought processes and reactions.
Electroencephalography (EEG) – a technique for recording the electrical activity from different parts of the brain.
Ligaments – tough, fibrous bands anchoring the bones on either side of a joint and holding the joint together.
Non-steroidal anti-inflammatory drugs (NSAIDs) – a large family of drugs prescribed for different kinds of arthritis, which reduce inflammation and control pain, swelling and stiffness.
Rapid eye movement (REM) sleep – light sleep during which brain activity is increased and the eyes move very quickly behind the eyelids. It is thought that most dreaming occurs during REM sleep. A normal sleep pattern consists of several cycles of REM sleep and deeper, more restful sleep, with REM sleep making up about 25% of the total sleeping time. Too much REM sleep can lead to waking feeling unrefreshed.
Tendons – strong fibrous bands or cords that anchor muscles to bone.
Further reading
Living with Fibromyalgia by Christine Craggs-Hinton. Sheldon Press 2000. ISBN 9780859698313.
Fibromyalgia: Up Close and Personal by Mark J Pellegrino. Anadem Publishing 2005. ISBN 9781890018504.
Fibromyalgia: Understanding and Getting Relief from Pain That Won't Go Away by Don L Goldenberg. Piatkus Books 2002. ISBN 9780749923068.
Useful addresses
The Arthritis Research Campaign (arc)
PO Box 177
Chesterfield
Derbyshire S41 7TQ
Phone: 0870 850 5000
www.arc.org.uk
As well as funding research, we produce a range of free information booklets and leaflets. Please contact the address above for a list of titles or, on this website, see Publications for people with arthritis.
Arthritis Care
18 Stephenson Way
London NW1 2HD
Tel: 020 7380 6500
Helpline (freephone): 0808 800 4050
www.arthritiscare.org.uk
Offers self-help support, a helpline service, and a range of leaflets on arthritis.
Fibromyalgia Association UK
PO Box 206
Stourbridge
West Midlands DY9 8YL
Helpline: 0845 345 2322
www.fibromyalgia-associationuk.org
Offers information booklets, book list and exercise videos, details of local support groups, helpline service, conferences, website and forum. Please send a large SAE for an information pack.
Information on drugs
Separate arc leaflets are available on many of the drugs used for arthritis and related conditions. We would recommend that you read the relevant leaflets for more detailed information about your medication.
